Grief and Chronic Illness: The Invisible Layers We Carry
By: Dave Clark
So much of chronic illness and disability is invisible to those around us. I have lived with chronic fatigue syndrome (ME/CFS) for the past nineteen years and know the daily experience of having my body and brain’s capacity reduced, even though outwardly I might look like I am going okay.
This lived experience pairs with my part-time job as a counsellor, often working with people through grief. And grief is some of those invisible layers that all of us with chronic illness carry.
The layers of grief we experience when living with chronic illness
Grief happens to us when we experience any ending, change, injustice, death, a lacking, a loss or disconnection. Chronic illness contains most of those – there are so many changes, so many endings, so many losses that we experience.
Some of the unique things we grieve when living with chronic illness are:
- changes to our goals, life dreams and longer-term plans. So much of our life is
now edited down into pockets of irregular energy and health - loss of employment and income (plus the added medical costs)
- changes and losses to our mobility and freedom
- disconnection from social opportunities and friendships
- reduction of intimacy and sex
- loss of confidence in ourselves and our body
- a loss of identity and self-worth
- difficulty finding words to describe what is happening internally
- the unfairness of seeing others live full lives while ours is shrunken down
- loss of predictability – we don’t know what our health will be like day-to-day
What does grief look and feel like?
Grief is not just sadness and tears. Grief impact us physically, emotionally, mentally, spiritually and socially. It looks and feels different for each person – it is usually quite strong in the early weeks and months, as our whole system is having its world turned upside down.
It can feel like a shattering, filled with a range of emotions, foggy minds and additional exhaustion. It sucks!
What joins in with that is the wrestling – this is all the changes to how we function day-today, and that can take a long time to adjust to. There are the ‘why me?’ questions that arise.
These are normal and healthy to experience.
There is also the shaping. Given that our illness is long-term, we start to shape what our life looks like now, finding different yet still meaningful ways of engaging with our world. These elements of grief don’t follow a neat path, so it’s normal and expected to experience those layers regularly and at the same time.
So, given that grief is part of our experience, what can help us carry these layers of grief in a gentler way? Keep an eye out for part two of this blog where I’ll share with you practical strategies that I’ve found useful on my journey with chronic and invisible illness.
Article supplied with thanks to Kelli Kieselbach.
Feature image: Canva
